Ulcerative Colitis, Part 3: The Interview
If you’ve been keeping up this far, you can tell that this was a big deal for me being diagnosed with this disease and obviously it was an issue but what is it really? I’m glad you asked. I could give you a whole lot of dictionary definitions but that wouldn't really be me, now would it? So let me answer some pressing questions.
What is Ulcerative Colitis?
Per the Mayo Clinic, Ulcerative Colitis, or UC, “is an inflammatory bowel disease (IBD) that causes long-lasting inflammation and ulcers (sores) in your digestive tract. Ulcerative colitis affects the innermost lining of your large intestine (colon) and rectum. Symptoms usually develop over time, rather than suddenly.
Ulcerative colitis can be debilitating and can sometimes lead to life-threatening complications. While it has no known cure, treatment can greatly reduce signs and symptoms of the disease and even bring about long-term remission.”
There are also different types of UC and, I’ll be honest, I’m not sure which type I had but I pretty much had all of the symptoms. For me, that included frequent trips to the bathroom, bloody diarrhea, abdominal pains, cramps, the works. If there was a symptom, I’m sure I had it.
How do you get it?
Even better question!! I didn’t actually find out until 3-4 years in that my grandfather (mom’s dad) had Crohn's Disease which is close to UC. Apparently it’s hereditary and yet, none of the children he had with my grandmother had it and neither did any of their kids. Nope! Skipped right to me at 26 so I lived my life not knowing anything would or could happen like this. Additionally, my friends and I did some research and found this thing only really hits people in North America and Europe. Most parts of the world miss it and it seems to be because we have a decent enough diet to where if our immune system gets bored protecting us, it turns inward just for shits and giggles.
Didn’t you mention something about eating more veggies and improving your diet?
Yes, on day 1, I mentioned trying to incorporate more healthy foods into my daily regimen and having terrible timing doing so. You see, UC ends up giving you flare-ups constantly and they get worse if you eat things to trigger it. Things that you would assume are good for you end up with the opposite effect, causing more pain, more blood, more bathroom breaks, and more hospital visits. What’s worse is that everyone responds differently to it so the things that triggered my flare-ups aren’t universally the same for everyone else. You have to figure out what your triggers are by trial and error.
Did your doctor help you figure out what some of your triggers may be?
Absolutely not!! He actually told me not to worry about changing my diet and to focus on the meds! And while I trusted his assessment of my condition, the part about not changing my diet seemed naive at best and dangerous at worst. I decided to do some digging around for more comprehensive information and what I found out put my whole last 8 months into perspective. First, diet is the most important part of ulcerative colitis and keeping a food journal to log your issues is key. While everyone doesn’t have the same sensitive foods, some are more common than others and this is where the puzzle pieces started to fit and my life came crashing down. Most people with UC have issues with red meat, fiber, anything that can be used as a laxative and can become lactose intolerant. These things will cause flare-ups and result in more painful stools and the blood I had been experiencing along with it.
I’m guessing that this wasn’t good news for you?
So let me break this down for you: I ate burgers most days of the week, whether cooked at home or from Burger King. I drank milkshakes, strawberry milk, ate cheese at least twice each day, and a bowl of cereal for a snack daily as well with whole milk. Even to this day, I am a cereal addict. I used to have 13 boxes at a time in my cupboard just in case. Additionally, I liked fiber heavy cereals like Life, Frosted Mini-Wheats, Honey Bunches of Oats and many others. Fiber is a laxative and is also a big part of most fruits and vegetables. I also learned about an ingredient called sorbitol which is one of the first ingredients in gum and I was a heavy gum chewer.
If you’re keeping track, you can see why this was life-changing for me. My new allergies basically meant I couldn’t eat like I was doing at all anymore. I was in so much pain regularly because I was taking in nothing but everything I shouldn’t. The fiber explained why I put my tongue on the oatmeal and ran to the bathroom. It’s nothing but fiber. But, I was also eating healthier, meaning more fruits and veggies...that are also high in fiber. My cereal snacks were killing me with fiber and dairy, and I was eating beef as if my life depended on it...and it was actually making me worse. And for the health-conscious of you reading, I’m sure you’re wondering what I was allowed to eat since most healthy stuff was off the table? Well, the answer is junk. Basically most junk food is innocuous when it comes to UC so it gets a pass in your new upside-down digestive system. Over time I learned to navigate around my limitations but very carefully and not always correctly. For my cereal fix, I went back to less fiber heavy fare so mostly the kid stuff like Froot Loops and Frosted Flakes, and I found out about lactose-free milk (which, to this day, is a life-saver.) For cheese, I started using Swiss, which I found out is a low-lactose cheese, and I replaced beef with turkey. The fruits and vegetables were unfortunately on the backburner. This was my life for the better part of the next 5 years and I had to make overnight changes. I finally understood people who looked at the ingredient lists obsessively while grocery shopping as I became one of those people. I started keeping notes on what would cause a flare-up and strike that from the list of things I would consume. I found out a lot of foods have ingredients in them that seem to have no business there. Sorbitol is in a LOT of things and even unhealthy stuff can have fiber. It opened my eyes, to say the least.
Was there anything you didn’t have to worry about?
My one saving grace was the thing I actually got rid of well before this came about. Caffeine and carbonated drinks are basically off-limits as well when you’ve got UC as both can be used as laxatives and disrupt digestion. For heavy coffee and soda drinkers, I know this would be a death blow but for me, it was a sigh of relief that I didn’t have to learn how to drink different things starting from then. I was pretty much drinking water with everything already so it wasn’t an issue at all when it was pretty much mandated.
How do you treat UC?
Proper diet and endless rounds of medications. I’ve heard that people can go into remission over time but it’s more of a pipe dream than guaranteed. There are a ton of drugs that are available for UC, most names I’ve forgotten (I’ll make sure I have them when I write the book. You know there’s going to be a book about this, right?) I was pretty much a non-stop guinea pig for different products from my diagnosis until the day of my surgery. I took different pills over that time but the most stand out were prednisone (a steroid) and Humira.
Humira didn’t work at all but it takes you a long while to figure that out and it’s expensive. If I remember from then, they would mail it to me in a freezer box, it was $1500 a month and you had to literally inject it yourself in either your stomach or thighs 6 times the first day, then keep injecting yourself weekly, then bi-weekly, then hopefully monthly as your symptoms improved. Mine never improved and I ended up in the hospital as my symptoms were already so severe that the Humira might as well have been water. Maybe it works for others but it didn’t do a thing for me.
Did anything work?
Yes and no. The prednisone. For those that are lucky enough to not ever have to use it, prednisone is a steroid that can help take care of some issues that you have short term. And I seriously mean short term. I was taking 40 MG (they want you at about 10) to calm my issues down and you’re only supposed to be on it for a few weeks at most. Long story short, I was on and off of them for the better part of 4 years. Why? Because they were cheap and I had little to no insurance or other options since I took 15 other prescriptions before it and none of them worked. Prednisone did the trick but at a pricey cost. I had unnatural weight gain, what was described as “moon-face,” my testosterone was all over the place, I couldn’t actually lose the weight so long as I was on them and, this is most important, they gave me diabetes.
Yes, if you take them long enough, you can get medically induced diabetes. It’s one of the side effects of taking it too long. Remember, I grew up with no health problems and now I had a bad colon and diabetes. I was also told this randomly by one of my doctors after taking a test for a different reason and it was presented as if I should’ve known I had it already. It was the biggest shock of my life and so I then had to get treated for that. I had sets of pills for it, a glucose meter, the works. The only good part about it is that I only knew I had it for about 4 months and then it was surgery time and I only have it while on the prednisone. So long as I don’t take the pills (which I had to for a different issue briefly afterward) I don’t have it. Type 2 diabetes is no joke.
That’s a lot to take in.
Tell me about it. And that’s honestly only the surface level stuff. There’s so much more that happened that made it worse and better. Stress will cause a flare-up and my best friend committed suicide the year after I got to Texas. I also had a brief period in which my symptoms were completely cured by accident for around 10 days with amoxicillin I was prescribed due to having my wisdom teeth pulled. My doc told me not to take it anymore because it might cause long term harm, even though short term it literally cured me. It’s safe to say that I was skeptical of everything he told me.
Well, I’m glad you’re better now.
Better? Yes. Completely fixed? No. But I’m in a much better place now than I had been. But that’ll wait for day 5.
Thanks for answering the questions you made up and answered yourself.
Don’t mention it. Please don’t.
To be continued...